Barf

That's what waiting makes me feel like.

Tea and crackers is all I can stomach.

Job hunting makes me feel like my entire worth as a human being is being judged. It makes me physically ill.

I have these two opportunities hanging over my head and, now that I've had two days to obsess over every word and every mannerism I displayed, I have convinced myself that I didn't get either job.

Barf.

***

BUT, my website is just a few days away from public consumption.

I'm completely unsure of myself now. I look at the people I have put on my notification mailing list and think, oooh, that person is going to judge me. That person will think this is stupid. Those people will think I'm dumb. That person will unsubscribe. That other person will wonder why I think I can do this.

I question myself every minute now, all because a pair of job interviews have got me off my game.

I hate my brain.

The Beginning

A  couple of days ago I did one of those memes that go around Facebook from time to time.

“Justin gave me the age 25. These are the three things that aren't really secrets, but not many people know about them.

I was dating a crack-head con-man who went to jail for stealing our neighbour's car, stealing our roommate's credit card, defrauding several department stores and double-doctoring.I wanted desperately to believe that god would save my life.I was on welfare.

Comment and I'll give you a year to share three secrets about.”

A couple of friends were very surprised about the second entry. Given what they know about me now their surprise is natural. But me at 25 and me over 30 (when I met both these friends) were two different people. I think further explanation is in order.

When I was 25 I wanted desperately to believe that god would save my life. That was 1999. A year later, things were different.

I don’t remember exactly what day it was, but it happened mid to late 2000. My “boyfriend” had just been sentenced to 28 months in prison for a string of charges related to his interest in taking other people’s property and using them to purchase illegal drugs.

At the time I was convinced that I had been damaged beyond redemption from several years of alcohol and drug abuse. I was a non-meeting-attending member of a 12-step “fellowship” where I was being told that if I could just “get the program” and “develop a relationship with the god of my understanding” I would be happy and my relationships would be good.

Even in typing that I feel like an idiot.

So what I was doing was a lot self-help using writing and getting peer support from a few self-identified substance abusers and trying to keep up a solo neo-pagan religious practice while in a relationship with a status obsessed, drug abusing, Jewish convert who thought I was worshipping the devil and telling too much of our business to my friends.

The crazier our relationship got the more I kept praying that god would just end the insanity. I would pray and light candles and cast spells and lay down on the floor in the fetal position and just cry, waiting for god to fix this fucking *thing* and make it right.

The only thing that I knew for sure was you have to believe that EVERYTHING is god’s will or NOTHING is god’s will... you don’t get to pick and choose. People who chose and picked the will of god were not being intellectually honest about what god could do in their lives. (The irony of that statement is not lost on me, by the way.) If life was still crazy it must be because I didn’t believe enough or god wanted me to learn something or maybe god thought that this was the best I could ever do.

I didn’t believe that god would save my life. I wanted to believe that god would save my life. I wanted that more than anything and I would do whatever the believers in my life told me to do to get god to do that. So I continued praying. I continued writing. I continued lighting candles and casting spells, consulting cards and casting rune stones. Every night I ended up in the fetal position on the floor in tears. Clearly I was doing something wrong.

But on that day shortly after I insured that my crazy boyfriend was settled into the minimum-security correctional institution where he was to serve one-third of his sentence before being considered for day parole. I had shipped him some of his stuff and visited him enough times to convince him that he should not “escape” from prison and just do his time, I made one decision.

I decided to stop seeking god.

I wrote the crackhead boyfriend a “Dear John” letter.
I convinced the person I was living with to tell him I had moved out and lied to him about where I was living.
I moved to another town.
I cut all my hair off, I bought a suit and a pair of heels and I went and landed an interesting job.

Months later I realized that my life got better the minute after I stopped praying for god to fix my life and made a decision to actually do something. From that day forward I started questioning the idea of god.

I would not utter the word Atheist for another two years but this was the beginning.

Straddling Worlds

Nicole over at My New Normals said something that felt like a kick in the shins:

I just have to believe that by just having it, it doesn’t diminish who I am.

I think this all the time. It goes something like this:

If I am sick I am worthless.
If I am unable to pull my own weight I am worthless.
If I am incapable of doing it (whatever it is) I am worthless.

So I work extra hard at being normal so you won't notice when I'm not.

I am fortunate that I still "pass" in the abled world. I can walk pretty far. I can still grasp things. My cognitive skills aren't what they used to be, but I'm still pretty sharp. My sense of humour is as black as ever. I do okay.

Sometimes I have to act "as if" I am abled and do things that trick you into thinking I'm okay. I'll make an excuse to stop for something to drink or eat so we can sit down. I'll tell you I'm running a bit late when I really just had a hard time buttoning up my shirt so I switched outfits. I'll leave early just in case where I am going ends up being further than I expected and I might have to stop along the way if I am dressed to warmly.

It's just little stuff that most people never consider, and quite frankly I'm not sure I care if they ever do. Why would you consider the accommodations I have to make to live in a world where people do all the same stuff I do with no accommodation?

That said, I really am doing okay. As long as I can keep steady hours, eat and sleep on a schedule and stay cool I can pretty much do what every single other person in this city can do.

Except walk in a straight line, do up buttons and work a touchscreen with the tips of my fingers.

Thanks for the inspiration, Nicole. I enjoy your new normals.

Not There Yet - A Haiku in Triptych

From Peace Be With You - a blog by Judy

I am still in shock.
I may never recover
and accept the blow.

It is not recent,
my decades-old life-slaying
damned diagnosis.

Moments of peace come.
I may even find laughter.
The sadness remains.

While my diagnosis is not decades-old, I really empathize with this feeling. Like I said the other day I'm doing really well physically. My mental health is probably as good as its been in years.

But sometimes, mostly when I think about the future, I cry. I know that the future we have planned depends on so many things we can't control. Like, I don't know if I will end up in a wheelchair. I don't know if the fatigue will one day take over my life. I don't know if I will always be able to move my hands.

I don't know a lot of things about my future, but what I do know is that I do not want to "accept" that I've got an incurable and life-limiting disease.

Whenever someone says "Hey, ya gotta stay positive!" I tell them that the only thing my positivity does for my illness is make it easier for my friends and family to live with me. It doesn't change the course of my disease, or make it easier to do up my own buttons or put on my own bra or walk without tripping on my own toes.

My "positive outlook" is mostly for the benefit of others because being real about how I feel about my prospects makes people, even the people I love, uncomfortable. I also try not to be an asshole to the people I love. I don't want to hurt those people.

After more than 3 years I have come to accept one thing. I am not going to accept having MS. I am going to live with it. I am going to get on with it. I am even going to do what is in my limited power to not let it get the best of me.

Searching for the Words

In the story of my life, my Catholic Confirmation was really the beginning of my honest-to-goodness questioning of what faith was and what was expected of me. I remember going through the whole religious process with not a whole lot of concern for the spiritual aspects of confirming my belief that I would be a Catholic for the rest of my life. I remember being concerned that this was far too large of a decision for a 10 year old to be making. I remember really wanting my confirmation name to be linked to my family some way. (I chose Theresa, my great grandmother’s name) I remember being upset that my aunt couldn’t understand why I would ask her to be my sponsor because she didn’t remember that she was my godmother. I remember giving far more consideration to my appearance and remembering things we had to repeat than I was about any relationship I was supposed to be developing with god or Jesus.

Part of the process was going on a “spiritual retreat” to the convent nearest to our school. Worst. School. Trip. Ever. We went to the convent at Mount St. Joseph for a full day of prayer and contemplation of our future life as “full patch” members of the Catholic faith. I recall a nun and a priest giving a speech to us. I don’t recall any of my classmates taking it all that seriously. I spent some time just wandering around the grounds trying to figure out what the nagging feeling was. It was a feeling that something wasn’t right, not necessarily that something was wrong, but just… not right. I don’t know that I could put my finger on it even now, but I found myself walking in circles around the garden path trying to figure something out, to no avail. I remember a classmate teasing me for taking all of “this god stuff” too seriously. Was I taking it too seriously? Probably, but not in the way that I was being teased about. I was not devout. I was sure I was not doing the right thing.

What I really wanted was to grab someone and beg them to help me find the language to put that feeling into words. But I was there in a convent, surrounded by people who’s job it was to make me a good Catholic and my peers who were just thrilled we weren’t at school. I just wasn’t sure that confirmation was right for me, but I knew that I didn’t really have a choice about it. My robe had been rented. My stole had been named and symbols of my Catholic faith dutifully glued to it. My aunt was coming to be my sponsor and family was coming from out of town. I even managed to score a new 10-speed bike in black and silver out of the deal. I was going to be Catholic for life because that’s what my parents were and as their child I was going to be Catholic too. Catholicism was the only religion available to me so I didn’t know that there were other options, other than the faiths that would go door to door trying to spread their faith. I didn’t know then that a few short years later I would increase my vocabulary when it came to all things of faith.



This entry is an edited excerpt from the as yet untitled memoir I have been writing this year.

Weird

Is the deal with MS that you either get to walk straight or think straight but never both at the same time?

I have had all sorts of cognitive and memory stuff going on that's driving me crazy.

I've also had all manner of emotional issues as well; crying when I can't solve a puzzle, I hear a particular song or trip on my left foot.

I know that I am not in my right mind, and it's driving me batshit crazy.

So, on July 17 I'm throwing myself an Ultimate Dance Party post-afternoon burgers, dogs and sangria birthday party.

If you're in Vancouver, you should come.

Anticlimax

Today began with me having to face my own future.

Because people are assholes I have to travel by bus with a cane because I can't keep my balance standing up on a bus. (I also use a cane when I am going for either distance or speed because it helps my balance and that means I don't have to work as hard to walk) I sat in the first seat. It faces the wheelchair seat. Today the wheelchair seat was occupied by a woman in her late 50s/early 60s. I smiled at her when I sat down.

She said "You're so young to have a cane. You must have MS."

I admitted that I did and she said, "I went secondary progressive two years ago. I've been in the chair about 18 months." She went on to explain that she'd been diagnosed in the 90s and had been doing good for 15 years and then started going downhill and all the steroids and DMDs were powerless to stop it. She asked when I was diagnosed and when I told her she proclaimed that I was diagnosed at a "good time" because so much is changing.

Then we had to have the obligatory conversation about CCSVI and what we thought about it and weighing the pros and cons of going to Poland or Cuba or Italy to have the procedure done.

When all that was said and done we just sort of sat there looking at each other. She smiled at me, I smiled back. I realized that I must have a look of abject horror on my face because that is my MS nightmare.

(My full blown absolute terror is unending nerve pain, but the chair is right up there.)

I was also having some panic about starting Copaxone and really reevaluating why I was doing this, but I do know why now. It is very clear.

If 5 or 10 or 15 years from now I have a relapse that fully disables me I do not want to sit there thinking "What if I had done more?"

I couldn't live with that guilt knowing that I had options to put up a fight with this disease and I didn't take them. I've read the scientific literature and there's a track record with Copaxone after coming off Novantrone. There's a 15 year study showing that it does make a difference over longer periods of time.

MS doesn't come with a whole lot of options so I've got to take what I can of what's offered. When I get paid I'm walking down to Unity Yoga and asking if they'll teach someone who has to wear shoes (that has been a deal breaker for 4 other yoga studios). I'm walking every day. I'm watching what I eat and trying to manage my symptoms the best I can.

I also need to lose 30 lbs by the end of September because my cousin Angela is getting married and I am the hot sister.

My left arm has received its first shot. Its reaction is mild and it doesn't hurt. I'm just really aware of it in a way that I have never been aware of of my upper left arm before. Using the auto-injector made it really easy to get to the back of my arm and administer the shot. Tomorrow my left thigh will get the shot and I'm going to try it manually.

That should be, uh, something?

I think I am making the right decision. Joe's super supportive of the whole thing and sat through the nurse-led self-administered injection training with me. Francine was really nice and very patient.

I had convinced myself that it was really, really going to be a stabbing pain, but I didn't even feel the needle go in and thought for a moment or two that the auto-injector had misfired until I started feeling the drug coming into my arm. It was so not a big deal. I had convinced myself of much worse. Anticlimactic is probably an understatement.

I started out this day being really terrified of the future and its possibilities and I'm finishing this day feeling like I am taking an active part in trying to achieve the best future outcome that I can.

I don't like to think about tomorrow much, but tonight I'm pretty content with the choice I made today.

Trapped

I have been really, really trying to do things that will result in me getting a life for the past week or so. It's frustrating, because sometimes I am genuinely tired, but a lot of the time I've just convinced myself that I am tired so I can be lazy.

I am so lame.

I've been thinking a lot about what is holding me back from progress. I've come a long way in a year, I know this, but I'm still not *right*. It came to me today when I was trying to get myself off the floor. (I had sat down on the floor on purpose, I didn't fall.)

I am trapped in this body.

A body that doesn't work right or consistently.

A body that doesn't look at all what it looked like when I was well.

A body that I can't trust and I can't seem to change. Seems like every time I go to try to fix one thing that's wrong the fix causes something else to malfunction. It's bullshit.

Very truly, I feel like my body is my enemy; that it's the reason I'm so unhappy and swing from merely being annoyed and bitchy to massively hating my life and all situations in it from day to day. (Not generally hour to hour, unless something really full of bullshit happens during a given hour.)

Is it at all possible for anyone to come to terms with this without turning into a stark, raving Pollyanna-Let-The-Sun-Shine-In-and-Just-Think-Positively-No-Matter-What-Kind-Of-Bullshit-Is-Going-On-Because-It-Could-Be-Worse, The Secret reading nutjob?

I've spent sometime thinking about this. I don't think you can unless you can get to the point where you're okay with lying to yourself. Or your symptoms have been at bay for a while. That's just a false sense of security, because you know - You. Know. - that MS can kick the shit out of you one day without warning and you've got no recourse.

That said, I'm still putting in 40 hours a week. I'm generally not falling into bed with exhaustion before or after 11 PM. The HRT has fixed my hot flashes for the most part.

"Look on the bright side, it could be worse."

Do something that will make me feel better:

Join my MS Walk team! If you can't walk with me in Vancouver you can send me your money!

Or you can use your links on the right to pledge my team mates Margaret, Joe, Jeanine, Erin or me individually. Every dollar matters!

The UBC MS Clinic has submitted a CCSVI two-year research AND treatment study that will cost $3,000,000. We need to raise the money so we can find out exactly what the deal is with CCSVI and MS.


Thanks peeps!

What they don't tell you.

I've been waking up every morning and not recognizing the face staring back from the mirror.

My physical being has gone rogue. I don't recognize my face, my hair or my body. My bodily functions are alien to me.

I cried in public today. That's really not my style. I haven't cried in some time and to do it in public just made it more like a humiliating kick in the teeth rather than the painful punch in the gut it is in private.

The MS people talk a lot about symptoms and how to manage them but they don't tell you *why* you just want to stay in your house and never come out. It's not just the symptoms, I am now convinced of this.

It's the little embarrassments. It's the constant mental calculations of where you can go because every trip is a metric of distance + time + seating + washrooms. It's about the little stumbles, the lack of fine motor skills making it difficult to hold a pen, the small inabilities that just build up and up and up until the degradation brings you down and down and down.

It's the stares from strangers when they don't understand why half way down the block my left leg starts to drop or why I lose my balance trying to negotiate a curb. I'm not drunk and I'm not faking in order to ask for a seat on the bus.

It's all my old clothes and shoes mocking me from the closet. It's my wedding photo staring back at me on the wall. It's Marg's boots, Dianna's corsets, Sam's travels and Laurie's job.

But the thing that made me cry today was Speechless

Could we fix you if you broke?
And is your punch line just a joke?

Listography 6 - List your biggest fears

I briefly considered numbering these, but rejected the idea. I know I have fears, I am unsure that I want to know how many.

I will go blind again.
I will lose the ability to walk.
I will lose my mind.
I will amount to nothing.
I will hate every job I have for the rest of my working life.
My working life won't be as long as it could've been.
I will always be fat.
I will never walk in heels again.
Some how, some way, my love of cosmetics is the reason why I got MS.
Getting blown up by a bomb.
Freezing to death.
Living past age 90.
I have ruined Joe's life.
Ugly shoes will be all I can safely wear.
Conservative Christians of the Batshit Crazy variety.
I'll never figure out how to translate misanthropy and organization into a money making venture.
Stephen Harper and his Conservatives with a majority government.
NASCAR
Wal Mart
I will be arrested and charged with a crime I did not commit.

Symptom Log: Day 15

• Footdrop (Foot drags along floor during walking)
  
• Paraesthesia (Partial numbness, tingling, buzzing and vibration sensations)
• Anaesthesia (Complete numbness/loss of sensation)
• Intention tremor (Shaking when performing fine movements)
• Dysmetria (Constant under- or overshooting limb movements)
• Frigidity (Inability to become sexually aroused)
• Depression
• Cognitive dysfunction (Short-term and long-term memory problems, forgetfulness, slow word recall)
• Mood swings, emotional lability
• Anxiety 
• Fatigue 
• Uhthoff's Symptom (Increase in severity of symptoms with heat)
  
• Sleeping Disorders
  
• Inappropriately cold body parts

The footdrop continues to drive me f'in crazy. That's the symptom that bothers me the most when it happens outside my house. It bothers me because I know that people judge others' mental capabilities by what their physical capabilities are. I will tolerate a lot of judgments by other people, but I would rather die than people think I'm mentally impaired.

The symptom that bothers me the most is the confusion that stems from my cognitive problems. It has really effected my realationship with Joe because he thinks I'm just being difficult and trying to start an argument and I'm just trying to figure out what's going on and where he's going or what he is doing.

The symptom that will be the end of my marriage is the sexual disfunction. This is worse than when I was on depo-provera. That drug, I am convinced, prevents pregnancy by ensuring that you have no desire to engage in sexual activity. MS, I am convinced, is a cruel universal joke that prevents people from having any enjoyment out of life that doesn't require vast amounts of street drugs.

The symptom that terrifies me the most is the one that hasn't happened yet. What if I wake up tomorrow and I'm blind? What if I wake up tomorrow and I can't walk, or my left side is completely paralized, or I can't feel my face, or all of the nerves in my chest and back are screaming in pain, or etc. etc. etc? The uncertainty is what is killing me. I can't commit. I can't make plans beyond 6 hours from now. I can't get excited about the future.

Now that I am 1/2 the way through this project I wonder if I even care anymore.

I have a couple of really well meaning friends who tell me to live in today and be positive and happy now and I have a couple of really well meaning friends who have sent me links to research findings and tell me that tomorrow is another day and I will rise up, embrace and accept the cure that will come.

To me both of those ideas are as absurd and unlikely as George W. Bush leaving Laura to get married in Iowa to Dick Cheney. They are mutually exclusive. There is no hope for today if all I've got to live for is something that might or might not happen 20 to 30 years from now. There's no point in wishing for a better tomorrow if I can somehow manage to lower my expectations for today and accept what I've got where I am.

Wednesday brings another round of "Are we expending the right amount of resources on Ms. K?" with the MS clinic social worker, with a drop in by the nurse, the PT coordinator and the pharmacologist. 

If there is a bigger waste of time than dealing with MS in a way that "they" want you to deal with it, I have yet to find it.

There's more to this than what I'm saying

Just so you think I'm not making this shit up.

So what we (probably) have here is:

Reactive or Situational Depression: My life sucks.

Organic Depression: My brain sucks.

Medication Side Effect: I am on chemotherapy drugs that are doing some crazy shit to my ovaries. I am on and off steroids. No wonder I'm fucking crazy. My hormones are not stable AND my life and brain suck.

My former therapist won't see me because there's no behaviour we can modify until we know it's situational, not organic, or I come off the medication.

I have to see the psychiatrist that specializes in dealing with people with MS. Since there are only two of them in the entire city, I have to wait until June.

Getting sick has taken away all my mental health measurements. I can't fake sane anymore, even after 6-plus years of being able to do it.

"These changes ain't changing me..."

I am a firm believer that situations, relationships, and circumstances don't complete someone or make people into brand new people.

I think that they make people more of what they already are. They amplify what is already there.

I was never a happy person. I could have a good time, I could be personable and even warm and loving, but I've never been one of those people who sees the good in everyone or takes joy in the small things in life. I find life tedious, often joyless, and spend a great deal of time and energy just trying to get to the end of my life having endured as little pain and discomfort as possible.

MS has amplified this. MS has created for me a bullhorn in order to shout from the rooftops that there is no meaning, not much hope, and no real point to human existence but biological imperative.

The people I know, even the people who's JOB it is is to deal with people like me, don't want to hear me say, "I hate my life, every single minute of every single day." The best they can offer me is meds and a psychiatrist to monitor them. The only words of hope they've got for me is, "Things will be different in July." or "We'll know more in a year."

They can't tell me what different is going to be. They don't know what they'll know in a year.

"I hate my life, every single minute of every single day."

Whenever I get openly hopeful about something that starts working better or start talking positively about what I might be able to do come July or next year, in the back of my head I know that I'm acting like a "hugger" at the Special Olympics. It's solely for the benefit of the person I'm talking to. It's to make them feel better about my life and give them praise for saying or doing the right thing.

Because even if you earn gold at the Special Olympics, you're still disabled. That's the sum total of pretty much everything you will accomplish. And people clap because it's the only thing you're ever going to do that will get you public applause.

I won't lie to you about how I am feeling. But in a couple of weeks if you get the feeling that I'm not really there or present, it's probably because I don't care. I've been dealing with MS for less than 140 days, and I'm already tired of doing it.

At least with medication I can make both of us feel better.

How soon is now?

I imagine doing all sorts of destructive behaviour these days. Every time Joe comes in from outside after smoking I feel envious that I am "not allowed" to smoke. I haven't smoked in over 18 months and I think about it more and more every day.

There's nothing that I would like more than to spend the rest of my life drinking, smoking and enjoying prescription medications. I believe the term is "Comfortably Numb".

Sadly, I don't have the budget for such an endeavour. Mayhaps I should start buying lottery tickets just to fund it?

Three words:

Re-prioritize
Redefine
Adapt

On one hand, I'm told that I need to do these things so I can be "happy".
On the other hand, I'm told that I have to go slowly, patiently and scale back my expectations or I'll never be "happy". Live in the now, she says.

NOW SUCKS. I don't want to live in this Now. I want to live in someone else's Now. I've been trying to live in some other Now for my entire fucking life, and now I'm told that I absolutely have no other fucking choice but to live in this one?

I give up. I can't live like this and I can't live the way that I want to. I will call the authorities that need calling tomorrow morning. I'll try to fake some sort of hope to save those around me from any sort of discomfort. Today is the last day I talk about anything negative in public.

Only sunshine, lollipops and rainbows for this woman... or she'll say nothing at all.

The Future

Lisa put forward these four questions a blog post ago and I'll answer them now:

What elements made up your life before diagnosis?

Most of what made up my life before my diagnosis was doing the prep work for having a completely different life in 5 or 6 years. Going to work everyday, keeping on top of bills and money, getting Joe through school so he could get a good job that allowed me to go and get the education I've always wanted. I had friends that I could do stuff with when I could afford to do stuff. I was a part of the political party system. I worked for the candidate until I got too sick. I am on the local riding association executive. I obsessively watched and read everything I could about politics. I obsessively read and watched everything I could about fashion, but not trends. Much of my life was about what I could do with myself, for myself, by myself. I didn't have many friends who were interested in doing what I liked doing, and that included my husband. For an extrovert, I seem to have surrounded myself with introverts. My life was not as I wanted it to be, but I had the skills, knowledge and know-how to get there with time and support. With MS, I've got the time and the support, but the skills and know-how are gone.

What have you done as a livelihood?

For the past 9 years I have been in events/fundraising or an executive/personal assistant for the most part... with an 18 month sojourn into the legal field. It's a busy life with little emotional or monetary payoff, but it's what I know how to do.

Are you unable to do the same thing for a living at this very moment?

No. The key to being able to work in jobs like this is that you are capable of showing up everyday, with all your physical and mental capabilities, looking good and fresh and bright eyed, and being able to work anything from 8 hours to 12 hours without hesitation. That's not an everyday thing, but it happens more than you'd think. I still know how to do the job, I'm just not able to commit to a job like that because of the unknown future MS has given me.

And what had you pictured as your future?

I wanted a fabulous life all about me. When Joe and I decided to get married, it became all about us, and thus less personally fabulous because Joe doesn't like or enjoy many of the things I find fabulous. Since I have no real talents or interests, being fabulous is something that I've aspired to since the first time the "girls" dressed me up in their drag costumes and I passed as a boy in a dress at a gay bar. MS has stolen that from me, too.

MS has taught me that I am a really awful human being, and I'm not sure that I am at all interested in changing that. I'm extremely self-centered and selfish. I hate most people. I cannot tolerate people who are gullible, unquestioning or simple and people with no sense of irony or intellectual curiosity. I know that I am smarter than most people and really try to keep myself away from people who can't keep up or can't think abstractly. I hate children and old people I am not related to.

My social worker is sending me to the MS clinic psychiatrist, and I know that if I tell him the truth I'll be on anti-psychotics by the end of the session. She seems to think that I need to find "my soul" and re-prioritize my life.

I know where my soul is. It's in England. I sold my soul to Noel Taylor back in the summer of 2003 because I wasn't using it and I'm not sure that he's interested in giving it back. I don't believe in the soul. I don't believe that there's any part of me that's eternal, nor do I want there to be.

I have no priorities beyond making myself comfortable. In 80 or 90 years everyone who's ever known me will be dead so what I do now matters not, since I'm not curing polio or inventing the internet. I believe that the point of life is just pain management. You just work hard enough to make life as easy to deal with as possible. With MS my ability to manage my own pain is regularly defeated by my lack of money, stamina and cognitive abilities.

I'm not interested in embracing my life if there's no chance it won't end up fabulously. I have no talents and no interests beyond fulfilling my own need for comfort. Joe and I tried to talk about this last night and what it came down to was that he doesn't like me as a person very much and we're less compatible than he thought we were in the beginning. I am not interested in people and I'm less interesting than I think I am.

I'm supposed to find meaning from all this? I am supposed to find my "authentic self" or some such in all of this? I'm quite obviously failing as a human being and being physically disabled just compounds my worthlessness.

I've known for a long time that I'm just not a nice person. I guess I've just got what I deserve.

Shootin'

I had to hold the pistol a lot further away than was physically comfortable, partly because the hot gas coming out of the cylinder kept fogging up my safety glasses but also because I was having a really difficult time getting my eyes focused. The sights had no defined, crisp edges at all, due to vision issues I'll explain later. I'm actually shocked that I did as well as I did.

I also learned that getting excited about good things makes my left leg act up. Apparently, having MS means that you can't get happy, angry or generally emotional without having some sort of physical effect that has the potential to screw up your day.

"Of all the preposterous assumptions of humanity, nothing exceeds the criticisms made of the habits of the poor by the well-housed, well-warmed, and well-fed." - Herman Melville

I heard this last night at the end of the syndicated episode of Criminal Minds on A&E, and it got me thinking about how I judge people by their experience of the world and how I have been judged by my experience of the world. I have a difficult time taking people seriously who haven't lived outside their comfort zone. I have a difficult time trusting people who've never done something illegal. I can't be close to someone who's never fucked their life up for a period of time.

I have also found the criticisms by people in the MS world to be less than helpful or constructive. When I say that I am really not sure that a life with MS is worth living, I get told that I'm miserable and negative and I'll never appreciate the joy that is found by getting outside in a scooter. When I say that I can't read, people automatically start telling me to get prism glasses to stop the double vision, without even considering that I don't have double vision.

I have cognitive impairments that prevent me from remembering the first paragraph I read. When I start the second paragraph, I can't make sense of it because I don't remember the first one. So I have to go back and re-read the first, etc. etc. I took me a week to read a single chapter of The God Delusion so I gave up. I've cut my Google Reader subscriptions back because I can't read 97 news/politics/commentary sites every day. Even with only 30 I find myself skimming, because my brain is just not geared for retention.

I obsessively go over these blog entries and still miss typos and errors I never would've missed before. I used to be really smart, but thanks to MS, I've caught "the dumb". I really can't decide what I am more terrified of; losing the ability to walk, to see or to think.

My second issue with reading has to do with my eyes themselves. I can't keep them focused without actually *thinking* about it. Even as I type this I have to keep forcing my eyes to stay in focus. The eye doctor at the MS clinic says that it's not anything they can really fix with glasses, I just have to keep exercising my lazy eye focusing muscles. When you spend a great deal of time just trying to keep edges on the world it makes your eyes tired and you get headaches. I have headaches almost every day. I eat 6 Tylenol every day just to deal with it.

People with MS who want to give peer support seem to be more than happy to jump at you with a solution to a problem, even if you don't have that problem. Whether its my vision or my mental state (which wasn't exactly great *before* I got MS) everyone has got an opinion on how I should behave or speak as a sick person. I'm trying to live up to my own expectations these days, so forgive me if I fail to live up to yours.

But going out shooting yesterday was good for me. I was out and standing for more than an hour, I wasn't completely exhausted (or even all that tired) when I got home, and I enjoyed myself and the hour of almost normal I was able to have.

I have until bedtime Monday night to complete my music project. If you are a friend of mine, interested in helping and have 10 or 15 minutes to spare, please comment, send me a message, an @reply or email.

That's a lot of different communication mediums, don't you think?

Shame

Joe just said to me "I wanted to go for a walk with you today. It's beautiful out." and it felt like a punch in the gut and an elephant sat on my chest all at the same time.

A friend on Facebook pointed out that I seem to have a lot of time on my hands. That may be the understatement of the week.

I have a great deal of shame about not being able to work now that I've stopped feeling sick. ("Sick" is puking and/or pain. "Not well" is MS symptoms.) I'm still not well, and my future is too uncertain at this time for making plans, but man do I feel like shit about not being able to do much of anything.

I don't want to go outside of my house. I don't look good, I don't feel well, I have to use a cane in order to mitigate any balance or endurance problems I will most likely have, and my lack of abilities is really, really embarrassing.

If I don't have a new thing come back or an ability get stronger each and every day, I get disappointed and angry that I am not getting well. I am embarrassed that I can't do things and that leaving my house strikes fear into my heart.

I keep forcing myself to do whatever house work I can just to prove that I am still a living, capable human being. It doesn't work, but I can eat out of my bathroom sink.

Life is a constant trade-off, innit?

Due to other issues I've had over the years, I've learned to find other measurements of how I am doing other than my emotional state. I don't trust my feelings because they often lie to me. But by measuring how well I am taking care of my work life, my physical appearance, and the condition of my house, I can figure how much I'm caring about my life.

MS has taken away my meter sticks. I have no job. I am unable to fix my appearance. I have a difficult time completing tasks around my house. So all I have is my emotional state to guide me, and it's depressed, lost and without a rudder.

Joe asked me to wake him up from his nap to go for a walk with him. I've already put that off for 20 minutes so task avoidance shouldn't go on much longer. That's what shame does.

It cuts you off from the sun. I missed the sun because I couldn't go outside.

I am an Atheist

As part of OutCampaign.org's "I am an Atheist" campaign, Friday, March 20, 2009 is the first online "out" day for various non-religious/non-believers on Facebook. It's migrated to the blogosphere over the day and I'm pleased to be a part of it. In short:

"We rally for freedom of thought, the right to believe and not to.

We rally to erase the social stigma around nonbelief.

We rally in solidarity with those who live where freedom and equality for nonbelievers is only a dream.

We rally to tell the world: we are nonreligious, we are equal, respect us.

This is not a hate rally: we are against false beliefs, not those who believe in them. Intolerance will not be tolerated."

I didn't really take all of this too seriously until I saw Montel William's appearance on the Oprah show on Tuesday and had been evangelized to via email. And now my dander is up and my ass is chapped.

First off, MS is not a gift that has given my life meaning. I was not "given" MS so I would return to serving my lord and saviour. As a non-believer, I question whether there is an actual meaning or reason for existence at all. If there is a "greater meaning" it needs to happen in this life, now, rather than in some fantasy place after this life is over or in some future life where I try and work out the problems of this one.

To say that a disease is a lesson is to fudge the truth. Yes, there are problems in the environment, in the food systems and with lifestyle choices, but to act as though MS or cancer or HIV or whatever is divine retribution for the abuse of the planet or (more often) for the abuse of one's body is as bad as holding out an $85 a week colon cleanse as the solution to someone's problems. Or a vitamin, diet or exercise program as a cure-all to viruses and disease. Jesus/God/Higher Power are just as futile and false hope as any of the whack-job "cures" I've been offered over the past 40-ish days.

I know that in some circles, quoting Karl Marx is a conversation ender but here it is.

Religion is the sigh of the oppressed creature, the heart of a heartless world, and the soul of soulless conditions. It is the opium of the people.

Marx, K. 1976. Introduction to A Contribution to the Critique of Hegel’s Philosophy of Right. Collected Works, v. 3. New York.

Offering me religious redemption is as offensive to me as offering me platitudes or junk science to treat my disease.

I've been accused of being miserable and not wanting help. That is simply not true. I want help I can use. I have no problem with having to adapt my life to my disease, but telling me that babies, disability pensions and volunteer work are "fulfilling" and meaningful is a slap in the face. That may be *your* life; it's great that you can find some contentment in that, but that is not what I want for *my* life.

I am an Atheist. It's funny that the Holy Roman Catholic and Apostolic Church, the 12-Step movement and neo-paganism helped me get there, because I'm fairly certain that wasn't their intent. I am also very against peer-support as a result of my attempts to deal with sexual assault, drinking and drugs, mental illness and quitting smoking. With my experiments in trying to find someone who isn't completely Pollyanna about MS and a fully functioning person with a life not defined by MS, I'm convinced more than ever that peer support is how you keep the sick, sick.

In summary, if you've got some useful and practical suggestions about how I can retain my sense of self, keep at least some of the things I love in my life, and how I can get and stay well, then I'd appreciate your peer support. I'm not getting any better. My condition has not changed since my first post about the improvements. I need useful solutions in order to deal with this.

But if all you've got is "you gotta change", "your life as you knew it is over, suck it up princess", and/or "pray ta Jeesus", you aren't my peer.

As a side note, I'm working on a project with the MS clinic's social worker to find something to be inspired by. Since personal stories don't really do it for me, I've decided to find inspiration in music. I've asked my friends who've expressed an interest in helping me to send me a single mp3 of a song that inspires them. Since last night I have collected four songs. As a result of this project I am now using my iPod as a defence mechanism. Here's the song of the day:

No way of knowing if she's ever coming back
No way of knowing if I care or not
No way of knowing if she's right or if she's wrong
No way of knowing if I'll carry on
And I'm alive
And I'm alone
And I've never wanted to be either of those

Alive Alone - The Chemical Brothers - Exit Planet Dust

"I haven't been afraid of dying since I was 16...

With MS, for me it's the living part that puts me on my knees."

Woman's post on the internet

(From a cool forum site that did not originate the spam.)

What if I'm simply not interested in having a new "normal" life?

A life that doesn't include anything that I like, love, am interested in, or am good at doesn't seem like a life worth living.

I can't read a book for more than 15 minutes. I can't walk if my temperature reaches 99 degrees, so I can't exercise. I can't do my job because I can't work more than forty-five minutes without a rest. I can't remember what happened to me last week. I talk about BC when I'm telling a story about something that happened in New Brunswick.

My hair and skin are a mess. I can't wear any of my old clothes or shoes. I can't watch a movie on a large screen because it causes double vision. I can't stand in one place long enough to enjoy an art exhibit. I can't have more than one glass of wine in an 8 hour period. My husband and I might as well be roommates who give each other hugs, pecks on the mouth and pep talks.

MS has stolen EVERYTHING that I love and is important to me. It's stolen every dream and aspiration I had for the future. This is my new reality. I don't think, act or look anything like I did 6 months ago. I don't know the person I see in the mirror, and I want her gone.

I used to be fabulous. Now I'm not. What do I have to do to get the old me back?

Based on most accounts, there's nothing I can do. This is it. This is "me, with MS". I don't want to settle into a disability pension and a "fulfilling" volunteer job. I don't want to have kids and build a family. I can't and won't find meaning in serving the lord.

Everyday I look at job postings to see what's out there these days, and I realize that even if I improve I won't be able to do anything that I am actually qualified for and experienced with.

Where and with what does that leave me?

I fear a disability pension and a "fulfilling" volunteer job.

My Kingdom for an $85 Cure!

As I mentioned before, I spent some time online with the MS "Truthers".

As a result of this, I have this crazy woman in Connecticut sending me her scientific thesis summaries about what causes and "cures" MS. She didn't write cures. She wrote "cures", because to hold out her formulations as a cure would be fraud and the FDA could move to have her shut down. But if she writes "cures", to mean "I live symptom free", it's perfectly legal.

She sent me information on her mail order business. She wants me to purchase her "cure" because in 5 days I will be "cured" if I do it.

So I read what her cure was.

$85 a week for a colon cleanse. $85 a week for a colon cleanse program that will only "guarantee" results if I do it for 52 weeks. In a row. At the same day and time of the week, every week.

THIS is how desperate this disease makes you, and if this woman had any sort of science and documentation to back her up *I* would probably try it. I would do just about anything, short of human sacrifice, to not have to deal with this. I would just like to get better, find some sort of maintenance program which gives me my life back and then forget all about having this disease.

But this science is coming from a woman who is a PhD candidate at a fine arts academy, which was the obvious next step after completing her MFA in Creative Writing.

Good "science" is often the product of Fine Arts education.